my crazy life… or mind.. whichever it actually is

Monthly Archives: January 2014

I realize, for various reasons, we are all at different points in our lives. Today I am simply frustrated at the fact that no matter how hard I work it feels like I am always close to the edge about ready to fall. According to some I might have already of fallen or be at the proverbial bottom, but at least I can admit it. I will be the first to say I am far from perfect, and probably more messed up then most people you know. I realized that there are many out there, for whatever reason, cannot admit how close to the edge they may be. One of my daughter’s friend’s dad is like this. His name is Dan, and he served for in the Army and was deployed to Afghanistan. Eight years later and it is beginning to catch up with him. He continues to have nightmares, lose friendships, and has his wife at her wits end.

I guess I just don’t understand how it can get that bad. Sure I have been bad and probably usually still am, but I have not been one to not ask for help when I need it. I don’t know if its pride, arrogance, or simply stupidity. A couple of years ago, back when I worked day shift, I took Dan with me to acupuncture. It was helping my pain and PTSD management along with other advantages. He knew I was also going to counseling and taking other steps to try and get help. We shared a lot of war stories and nothing he said really surprised me, what does though is the fact that here it is about two years later and things only get worse the more we stuff them and make excuses. I would rather be teetering on the cliff of the edge than not realize, and make excuse to be oblivious to it. No matter what I face (d) in life I am always try to push myself. Even with my bum legs I continue to push to accomplish things most people take for granted. Even when I can no longer stand, which I think is coming sooner rather than later, I will find some way to be me. Body parts, mental capacity, or emotional responses are only part of us we cannot let them beat us down. We might lose the battle every now and then, but I am not about to lose the war. Sure some days I truly believe it would be less painful to cut off my leg myself with a dull butter knife, cannot keep food down, and feel inadequate/ if not useless as a “man” but I am not going to quit trying. No matter how alone we may feel sometimes, all we really have to do is look around and realize that we are not the only ones. When I think I am isolated for my usual reasons, I take a trip to the veteran’s hospital. Literally hundreds of people who have been through a lot of the same things I have, and sometimes worse. I have had very few talk to me disrespectfully when they find out I was in the Army, which is nothing compared to how so many were/ are still treated for simply doing what our country asked of them.

In closing I would just like to say no matter the highest of highs or lowest of lows, emotionally there really is not much difference between them and one false move, or slip, and we might end up clear at the far end of the opposite one. One day at a time, one foot in front of the other (as long as I can continue to have two I guess), and continue climbing. Just don’t be to whatever the heck you are being/ doing to ask someone who may be able to help you for help. You just might be surprised how easy it is to change a tire, when you call AAA. Till next time- Joe

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I decided that since I am in a good deal of pain today, that I would take this opportunity to share what exactly I was diagnosed with over 11 years ago. I will make some notes alone the way. To point out my notes I will begin them all with – then my comment(s).

What is complex regional pain syndrome?

Complex regional pain syndrome (CRPS) is a chronic pain condition most often affecting one of the limbs (arms, legs, hands, or feet), usually after an injury or trauma to that limb. CRPS is believed to be caused by damage to, or malfunction of, the peripheral and central nervous systems. The central nervous system is composed of the brain and spinal cord, and the peripheral nervous system involves nerve signaling from the brain and spinal cord to the rest of the body. CRPS is characterized by prolonged or excessive pain and mild or dramatic changes in skin color, temperature, and/or swelling in the affected area. -Mine was caused from being in frigid water for 6-8 hrs. It was at best 34 degree fahrenheit outside. When I would start out in the water/ mud it was at about my knees, then I would work until I had sunk to the point pretty much my arms were about level with the top of the water/mud. I would then have someone help me to get unstuck and go again.

There are two similar forms, called CRPS-I and CRPS-II, with the same symptoms and treatments. CRPS-II (previously called causalgia) is the term used for patients with confirmed nerve injuries. Individuals without confirmed nerve injury are classified as having CRPS-I (previously called reflex sympathetic dystrophy syndrome). Some research has identified evidence of nerve injury in CRPS-I, so the validity of the two different forms is being investigated.

CRPS symptoms vary in severity and duration. Studies of the incidence and prevalence of the disease show that most cases are mild and individuals recover gradually with time. In more severe cases, individuals may not recover and may have long-term disability. Mine is a long term disability.

Who can get CRPS?

Anyone can get CRPS. It can strike at any age and affects both men and women, although it is much more common in women. The average age of affected individuals is about age 40. CRPS is rare in the elderly. Children do not get it before age 5 and only very rarely before age 10, but it is not uncommon in teenagers.

What are the symptoms of CRPS?

The key symptom is prolonged pain that may be constant and, in some people, extremely uncomfortable or severe. The pain may feel like a burning or “pins and needles” sensation, or as if someone is squeezing the affected limb. The pain may spread to include the entire arm or leg, even though the precipitating injury might have been only to a finger or toe. Pain can sometimes even travel to the opposite extremity. There is often increased sensitivity in the affected area, such that even light touch or contact is painful (called allodynia). -My right leg is a little worse than my left, but both are affected. Pain is best described as the feeling of when your arm or leg goes to sleep and you smack it against something hard, say a wall perhaps. This is pretty much my good level of pain.

People with CRPS also experience constant or intermittent changes in temperature, skin color, and swelling of the affected limb. This is due to abnormal microcirculation caused by damage to the nerves controlling blood flow and temperature. An affected arm or leg may feel warmer or cooler compared to the opposite limb. The skin on the affected limb may change color, becoming blotchy, blue, purple, pale, or red. -My legs are pretty much popsicles from October thru April. I have had people refer to my legs as that of a smurf. They are blueish grey with kind of the ashy look to them. Any change in weather or temperature of about 10 degrees or more makes the pain worse. I also have to sleep with an electric blanket inside of my normal sheets just to try and keep my legs warm.

Other common features of CRPS include:

changes in skin texture on the affected area; it may appear shiny and thin

abnormal sweating pattern in the affected area or surrounding areas

changes in nail and hair growth patterns -If I could re-produce this effect without the pain I could make a lot of money. I have the smoothest legs you could ever want. The nerve damage and cold pretty much killed my hair follicles.

abnormal movement in the affected limb, most often fixed abnormal posture (called dystonia) but also tremors in or jerking of the affected limb. -These are usually like muscle spasms. They tend to be the worst right as I am about to fall asleep and I jerk so much I wake myself up.

What causes CRPS?

Doctors aren’t sure what causes some individuals to develop CRPS while others with similar trauma do not. In more than 90 percent of cases, the condition is triggered by a clear history of trauma or injury. The most common triggers are fractures, sprains/strains, soft tissue injury (such as burns, cuts, or bruises), limb immobilization (such as being in a cast), or surgical or medical procedures (such as needlestick). CRPS represents an abnormal response that magnifies the effects of the injury. In this respect it is like an allergy. Some people respond excessively to a trigger that causes no problem for other people.

Peripheral nerve abnormalities found in individuals with CRPS usually involve the small unmyelinated and thinly myelinated nerve fibers (axons) that carry pain messages and signals to blood vessels. (Myelin is a mixture of proteins and fat-like substances that surround and insulate some nerve fibers.) Because small fibers in the nerves communicate with blood vessels, small nerve fiber injuries may trigger the many different symptoms of CRPS. Molecules secreted from the ends of hyperactive injured small nerve fibers are thought to contribute to inflammation and blood vessel abnormalities. These peripheral nerve abnormalities in turn trigger abnormal neurological function in the spinal cord and brain, leading in some cases to complex disorders of higher cortical function.

Another abnormality in CRPS involves the blood vessels in the affected limb, which may dilate (open wider) or leak fluid into the surrounding tissue, causing red, swollen skin. The underlying muscles and deeper tissues can become starved of oxygen and nutrients, causing muscle and joint pain and damage. At times, the blood vessels may over-constrict (clamp down), causing cold, white, or bluish skin. The dilation and constriction of small blood vessels is controlled by small nerve fiber axons as well as chemical messengers in the blood. -This is one of the long term problems. The improper blood flow eventually leads to tissue and muscle deterioration. So it’s basically like watching your body slowly die right before your very eyes.

CRPS also affects the immune system. High levels of inflammatory chemicals (cytokines) have been found in the tissues of people with CRPS. These contribute to the redness, swelling, and warmth reported by many patients. CRPS is more common in individuals with other inflammatory and autoimmune conditions such as asthma.

Limited data suggest that CRPS also may be influenced by genetics. Rare family clusters of CRPS have been reported. Familial CRPS may be more severe with earlier onset, greater dystonia, and more than one limb being affected.

Occasionally CRPS develops without any known injury. There may have been an internal injury caused by an infection, a blood vessel problem, or entrapment of the nerves, so careful examination is needed to determine the cause and treat it.

In many cases, CRPS is the result of multiple causes that act together to produce various symptoms.

How is CRPS diagnosed?

Currently there is no single diagnostic test to confirm CRPS. Diagnosis is based on the affected individual’s medical history and signs and symptoms that match the definition. But because several other conditions can cause similar symptoms, careful examination is important. Since most people improve gradually over time, diagnosis may be more difficult later in the course of the disorder.

Testing also may be used to help rule out other conditions, such as arthritis syndromes, Lyme disease, generalized muscle diseases, a clotted vein, or small nerve fiber polyneuropathies (such as from diabetes), because these require different treatment. The distinguishing feature of CRPS is usually a history of earlier injury to the affected area, as most of these other conditions are not triggered by injury. Individuals without a history of injury should be carefully examined to make sure that another treatable diagnosis is not missed.

Magnetic resonance imaging or triple-phase bone scans sometimes identify CRPS-characteristic changes in the bone metabolism. CRPS is often associated with excess bone resorption, a process in which certain cells break down the bone and release calcium into the blood.

-Mine was tested with nerve tests. They take two different needles and stick them in various areas then they push a button on one that sends an electrical charge through to they other one. They also tend to turn it up until your body responds and can send the signal to the other needle. yes it is more painful than it sounds.

What is the prognosis?

The outcome of CRPS varies from person to person. Almost all children and teenagers have good recovery. Occasionally individuals are left with unremitting pain and crippling, irreversible changes despite treatment. Anecdotal evidence suggests early treatment, particularly rehabilitation, is helpful in limiting the disorder, but this benefit has not yet been proven in clinical studies. More research is needed to understand the causes of CRPS, how it progresses, and the role of early treatment.

How is CRPS treated?

The following therapies are often used:

Rehabilitation therapy. An exercise program to keep the painful limb or body part moving can improve blood flow and lessen the circulatory symptoms. Additionally, exercise can help improve the affected limb’s flexibility, strength, and function. Rehabilitating the affected limb also can help to prevent or reverse the secondary brain changes that are associated with chronic pain. Occupational therapy can help the individual learn new ways to work and perform daily tasks.

Psychotherapy. CRPS and other painful and disabling conditions often are associated with profound psychological symptoms for affected individuals and their families. People with CRPS may develop depression, anxiety, or post-traumatic stress disorder, all of which heighten the perception of pain and make rehabilitation efforts more difficult. Treating these secondary conditions is important for helping people cope and recover from CRPS. -YES!! DUH, you get to watch yourself slowly become less and less able to do things physically that you once could do.

Medications. Several different classes of medication have been shown to be effective for CRPS, particularly when used early in the course of the disease. No drug is approved by the U.S. Food and Drug Administration specifically for CRPS. No single drug or combination of drugs is guaranteed to be effective in every person. Drugs to treat CRPS include:

corticosteroids that treat inflammation/swelling and edema, such as prednisolone and methylprednisolone (used mostly in the early stages of CRPS)

drugs initially developed to treat seizures or depression but now shown to be effective for neuropathic pain, such as gabapentin, pregabalin, amitriptyline, nortriptyline, and duloxetine

botulinum toxin injections

opioids such as oxycontin, morphine, hydrocodone, fentanyl, and vicodin

N-methyl-D-aspartate (NMDA) receptor antagonists such as dextromethorphan and ketamine

nasal calcitonin, especially for deep bone pain, and

topical local anesthetic creams and patches such as lidocaine.

-I have been on nortriptyline for about 10 years now. It is the only one that helps a little. Like an medication the long term affects add up. I am 35 and get an EKG every year because of the medication, and it also causes the enamel of the teeth to slowly erode also. (mine are ok so far, but I keep an eye on it)

All drugs or combination of drugs can have various side effects such as drowsiness, dizziness, increased heartbeat, and impaired memory. Inform a healthcare professional of any changes once drug therapy begins.

Sympathetic nerve block. Some individuals report temporary pain relief from sympathetic nerve blocks, but there is no published evidence of long-term benefit. Sympathetic blocks involve injecting an anesthetic next to the spine to directly block the activity of sympathetic nerves and improve blood flow.

Surgical sympathectomy. The use of this operation that destroys some of the nerves is controversial. Some experts think it is unwarranted and makes CRPS worse; others report a favorable outcome. Sympathectomy should be used only in individuals whose pain is dramatically relieved (although temporarily) by sympathetic nerve blocks. It also can reduce excess sweating.

Spinal cord stimulation. Placing stimulating electrodes through a needle into the spine near the spinal cord provides a tingling sensation in the painful area. Typically the electrode is placed temporarily for a few days to assess whether stimulation will be helpful. Minor surgery is required to implant all the parts under the skin on the torso. Once implanted, the stimulator can be turned on and off, and adjusted using an external controller. Data shows that about one-fourth of individuals develop equipment problems that may require additional surgeries.

Other types of neural stimulation. Neurostimulation can be delivered at other locations along the pain pathway, not only at the spinal cord. These include near injured nerves (peripheral nerve stimulators), outside the membranes of the brain (motor cortex stimulation with dural electrodes), and within the parts of the brain that control pain (deep brain stimulation). A recent option involves the use of magnetic currents applied externally to the brain (called repetitive Transcranial Magnetic Stimulation, or rTMS). The advantage is that no surgery is required; the disadvantage is need for repeated treatment sessions. – I have my own ESTEM (basically the same as TENS) unit. I typically have to do therapy about twice a week.

Intrathecal drug pumps. These devices pump pain-relieving medications directly into the fluid that bathes the spinal cord, typically opioids and local anesthetic agents such as clonidine and baclofen. The advantage is that pain-signaling targets in the spinal cord can be reached using doses far lower than those required for oral administration, which decreases side effects and increases drug effectiveness. There are no studies that show benefit specifically for CRPS. – I once was on 2 morphine patches a day and they were trying to convince me to get one permanently inserted. That is when I got myself off morphine, and changed my mindset. Although things have only gotten worse medically, I have yet to take that stuff again. There is no way to really function when you are on the stuff.

Emerging treatments for CRPS include:

Intravenous immunoglobulin (IVIG). Researchers in Great Britain reported that low-dose IVIG reduced pain intensity in a small trial of 13 patients with CRPS for 6 to 30 months who did not respond well to other treatments. Those who received IVIG had a greater decrease in pain scores than those receiving saline during the following 14 days after infusion. A larger study involving individuals with acute-phase CRPS is planned.

Ketamine. Investigators are using low doses of ketamine—a strong anesthetic—given intravenously for several days to either reduce substantially or eliminate the chronic pain of CRPS. In certain clinical settings, ketamine has been shown to be useful in treating pain that does not respond well to other treatments.

Hyperbaric oxygen. Several studies have investigated the use of hyperbaric oxygen therapy for chronic pain. Individuals lie down in a tank containing pressurized air, which delivers more oxygen to the body’s organs and tissues. Although research is still experimental, some researchers report hyperbaric oxygen can reduce swelling and pain, and improve range of motion in individuals with CRPS.

Several alternative therapies have been used to treat other painful conditions. Options include behavior modification, acupuncture, relaxation techniques (such as biofeedback, progressive muscle relaxation, and guided motion therapy), and chiropractic treatment. -acupuncture works great for me for many symptoms, just can no longer regularly go due to working swing shift.

What research is currently being done on CRPS?

The National Institute of Neurological Disorders and Stroke (NINDS), part of the National Institutes of Health (NIH), is the primary Federal supporter of research on the brain and central nervous system. Other NIH institutes also support research on CRPS and other painful conditions.

NINDS-supported scientists are studying new approaches to treat CRPS and to intervene more aggressively to limit the symptoms and disability associated with the syndrome.

Previous research has shown that CRPS-related inflammation is supported by the body’s natural immune response. Researchers hope to better understand how CRPS develops by studying immune system activation and peripheral nerve signaling using an animal model of the disorder. The animal model was developed to mimic certain CRPS-like features following fracture or limb surgery, by activating certain molecules involved in the immune system process.

Limb trauma, such as a fracture and then having the limb placed in a cast, is a common cause of CRPS. By studying an animal model, researchers hope to better understand the neuroinflammatory basis of CRPS and to identify the relevant inflammatory signaling pathways that lead to the development of post-traumatic CRPS. They also will examine inflammatory effects of cast immobilization and exercise on the development of pain behaviors and CRPS symptoms.

Peripheral nerve injury and subsequent regeneration often lead to a variety of sensory deficits. Researchers hope to identify specific cellular and molecular changes in sensory neurons following peripheral nerve injury to better understand the processes that underlie neuroplasticity (the brain’s ability to reorganize or form new nerve connections and pathways following injury or death of nerve cells). Identifying these mechanisms could provide targets for new drug therapies that could improve recovery following regeneration.

Children and adolescents with CRPS generally have a better recovery than adults and offer a unique model for the study of chronic pain reversal. Scientists studying children with CRPS are investigating neuroplasticity and the biological processes that cause CRPS to occur, in the hopes of developing more effective therapies and accelerated recoveries for adults and children.

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This is all too of a reality for many Vietnam veterans. The only good that I can see that came from it is that those of us that have gone after them have not had to pay the same reality that affects so many. We can now fight the system about things like what they injected us with, what medications they really gave to us, what we were really exposed to but they cannot tell the public. I usually cannot give them much when I see them on the side of the road, other than maybe a life somewhere. When I see them other places or at the veterans hospital I give them what appreciation and at the very least welcome them home. You would be surprised how many still have yet to hear that from a place of gratitude and thankfulness. Here’s to the price they continue to pay, the price my generation is beginning to pay, and to those yet to come all we can simply say is thank you for your service from at least one person and hopefully a grateful nation. The true heroes, as most veterans will tell you, are the ones that were not able to make it back, or through the repercussions of war alive. To those we can never be grateful enough for their ultimate sacrifice.

You’ve seen me. I’m the man standing at the intersection holding a small, poorly written message on a cardboard sign. I’m the woman peering into your window at the stop light, hoping you will reach out your hand and drop some change into mine. Most people don’t even have the decency to look me directly in the eye. Are you frightened of me? Are you so engrossed in your own personal world that you don’t notice me? Or, is it something else? Has the cold reality of indifference permeated the very fiber of every human being not sleeping on the streets?

I understand you don’t know me. You see me as a complete stranger, begging for money or cigarettes. Granted, there are some who wander around mooching off others simply because they lack the desire to wake up every morning and go into work. Having figured out that wearing old…

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As more and more of our brave men and women head home from the trials of war I am reminded of that daunting question… Was our time there worthwhile? I was technically non-deployable due to my condition from the training accident, but could not send my soldiers or my tanks without going also. So I convinced them that I would be ok for deployment and went. I still know I would regret it more if I did not go. I always told myself and my soldiers that regardless of why we were in Baghdad, Iraq we had one true mission while we were there. That was to bring back the same number of soldiers back that we went out with, the rest is for someone else more powerful than ourselves to decide if it was right or wrong. When in that situation you have to sometimes do, or participate, in things and actions that unless you have been there you honestly cannot say what you would do when faced with a similar predicament. I also had hoped that the history books would one day tell the true story of the wars. Little did I know that as more time passes the less and less meaning sacrificing 15 months of being deployed to Iraq actually has. I still do not regret going, there are a lot of things that is in the contract when one signs up to serve our country. It would be nice though if it was more worth the tireless effort I, and countless others, put into it. But then again, I guess no war ever truly is worth it. I could go on, but then again I am not real sure where to go with this. I guess I will end it with the fact that while I was deployed I saw and did a lot more than most, above and beyond what was asked of me. In the end, no matter why exactly we went or what the history books say it was worth it for me to deploy. That is for one simple reason no one can take away or debate me on, and that is the soldiers in my squad, my platoon, my company, my unit and we all did it for at the very least each other.

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Hopefully it is just me, but after looking back on this past year it is kind of depressing. This past year like many others has been what I can best describe as the lake of life. Life being the lake and me feeling as if I am stuck in the middle of it. Year after year I find myself out on the lake of life in my small boat with only one paddle. Sure sometimes the weather is good and sometimes it’s bad, but no matter what I do I keep going around in circles out in the middle of the lake of life. I have tried numerous tactics to get some real direction with my boat, but all it really does is wear me down even more. Especially this last year as I look back and all the effort I have put into making it better, realistically I am in about the same spot as last year. I have also realized this last year I do most things out of habit, comfort, and convenience instead of doing them out of want, desire, or need. If I try people always condemn me for trying too hard, doing things I do not know how to, or doing more than I am suppose too do. Since when were most, if not all of these things, a bad quality to have? I do make a lot of mistakes. Probably more than most people, but at least I am willing to try, unlike most other people I have encountered.

When I first moved back to the states, and was fixing forklifts for a living I remember one big incident. I went and diagnosed a lift truck as needing a new left motor. When it came in I took the part and put it in. It was a very difficult job, finally after putting it all back together the forklift did not drive at all now. They sent another person out to troubleshoot my work and the issue. I came to find out later that when I put it back together I accidently got two wires mixed up causing it to fry the control board, a $1200 part. Needless to say I was called into the manager’s office. He said basically the only real reason they did not fire me was that I tried. “If only we could get more mechanics willing to try and do what you accomplish we would be twice as good as we are now.” He told me.

The other day is the latest. I basically got chewed out for trying to mill a flat on a new tool for my machine. I understand it because I have not been trained on the machine, but I did not figure it was that hard to run a manual mill. Our mill at work, unfortunately for me, actually is.

So why keep trying? I don’t really know why. It’s just part of me. I have told the managers of practically everywhere I have worked that I would rather be the horse they have to reign back instead of the one they have to kick in the butt to get going. As much as I have faced in life I usually do not quit or give up very easily. Usually someone else has to inform me that I am trying something I should not be, trying too hard, or putting my efforts into a waste. I usually dislike it when others tell me what I should or should not be doing. It is almost as bad as someone telling me what I can or cannot do because I am disabled. Till next time… Joe